Menopause Matters Forum
Menopause Discussion => Other Health Discussion => Topic started by: babypink2807 on March 31, 2013, 10:26:40 AM
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Two weeks ago I was given Mesalazine and my final infliximab will be 19 April
I had a very restless night woke this morning with nasal ache again but very dizzy I sat up in bed and was swaying about confused and head spinning. I stood up and fell back on bed I was like drunk but head and balance all over
I looked up Mesalazine and a rare side affect is vertigo but its also an infection. I wondered if due to the infliximab (which suppresses immune system) I've developed an ear infection or vertigo. I feel ok but stuck n bed at the moment until my hubby takes me to the emergency doctor at 1pm
They still not 100% if its UC or Crohens
Anyone else experienced this
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Sounds grim :( you poor thing.
I cant give any advice as I have no personal experience of this drug. How did you get on at the doctor's?
Hope you are feeling better now.
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Been out all day and have just read this BP. I hope you got on OK at the doctors and that you soon feel better.
ariadne xx
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Well it turns out I do have Vertigo, its not nice at all. Have more tablets to take and a nasal spray too. It's lousy I can tell you
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You have my sympathy especially on top of all you have had to cope with, vertigo is a tough one and the thing is to find out what is causing it and what type. There are several!
MIne was/is BPPV and at the moment is responding to the Eply, I have to have another one next Monday.
I hope your vertigo responds the treatment that your GP has prescribed.
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Sorry to hear you've been so unwell Babypink :hug:
I suffer vertigo (on/off) and have done for years. Was rushed to A&E a couple of years ago with a suspected stroke, but (thankfully!) it was just a particularly bad episode of vertigo.
I now take histamines when I start to feel giddy and then lay down for the day (can't function).
I find that if I catch it quickly enough I can just 'lose' one day (better than being ill all week with it).
At the moment I only take my meds as & when, but eventually I suspect the vertigo will be frequent and I'll have to take the histamines every day. At the moment there doesn't appear to be anything specific that triggers it so I have to be constantly on guard.
Hope you soon feel better x
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When I had an viral ear infection a few years ago, I was at a work conference. I found that taking paracetamol did seem to suppress the dizziness enough so I could stand up and walk around without feeling sick.
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I woke the first week of Jan. with that awful spinning, new (! :o) at once it was vertigo >:(
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Been to my hospital appt for my Crohens checkup which the good news is, it's in remission. The not so good news is the vertigo which the consultant said is very rare side effect of one of the meds I am taking or a consequences of the nasal issue I had and its the infection gone into my middle ear
So back to basics, continue infliximab, back on prednisoline and now beta hoisting for vertigo and a visit to ENT for a head scan
The med given by OOH doctor was just for sickness and nothing for the vertigo. Which I have to stop
So fingers crossed it sorts itself out, the Vertigo is just awful
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Though I was getting better then Friday I felt dreadful. Never got to work stayed in bed, flat and still. I called my specialist nurse and she made me another appt with consultant as this "vertigo" is becoming debilitating. I'm struggling to type this without feeling sick.
My plan is to not have my next infliximab infusion in two weeks, continue with steroids and be monitored and take it from there. I am practically house bound and can't afford to loose my job, its been the worst year of my life and just want this madness to stop
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HUge hugs sweetie
Ive only had the dizzies never vertigo I can only imagine how your feeling dizzies are bad vut your must be horrific
Fingers crossed they can help asap
Has anyone prescribed belladona for you?
Mum used to get migranes I know its not the same but shed be so dizzy she couldnt walk and she vomited
They gave her that though it was 40 years ago and it helped her odd remembering something like that
XXXXXXXXXXXXXXXXXXXXXXXXXX
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Keeping still is the only way that I can control it. If I dare to move :o ........ the medication stops the nausea which is a side-effect of the vertigo, a bit like being sea-sick in that the inner ear and eyes don't line up properly .........
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Really sorry to hear you're still spinning :(
Vertigo is highly debilitating until you get it under control.
It's like being on the worst ever fairground ride and being unable to get off :(
I was given betahistine (a histamine, opposite to anti-histamines).
8mg tablets, 1-2 tabs per day to be taken with or after food.
You need to take it all the time when you have chronic vertigo, and you need to rest as much as possible (not that you can do anything else!!)
Thankfully, at the moment I find it really helps when I feel an episode coming on. It sounds like you need more time to get your meds sorted out before you can return to anything remotely 'normal'.
DON'T be tempted to over-do things the moment you stop spinning, or you'll exhaust yourself. Take things slowly. :hug:
Even when you start feeling better, don't try to read or watch tv for a couple of days or you'll possibly set it off again.
xx
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It is a common side effect of the infusion you are on Babypink. http://www.nhs.uk/medicine-guides/pages/MedicineSideEffects.aspx?condition=Crohn%60s%20disease&medicine=infliximab I think this is why they tend not to use the infusions until all other treatments have been tried. I hope you feel better soon. Surely you wont lose your job if you are signed off sick or have you only been there for a short time?
Taz x
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Hi all
There are two things going on which is why it's a little confusing
The side effect of the infusion which basically suppresses my immune system to susceptible to infections which would not normally cause problems.
I did have a sinus problem for two weeks, and they think its either symptomatic of that and gone into my inner ear, or a side affect of the Infliximab or possibly vertigo
I've been given Prochlorperazine then given Betahistine. Was back in hospital Saturday as it got worse again and I began to panic and was put back on Prochlorperazine which hasn't made too much difference but the doctor said I've tomgivemit chance. It's now a week and still struggling.
Back to my consultant tomorrow to discuss the way forward, I just want to be well. From a person who was fit all her life up to 16th December 2012 then bang it's been a fight ever since
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Vertigo does usually pass. But it is AWFUL! Take a list of queries with you to the Appt.!
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I have been wondering about the Laxido prescribed by your doc earlier in December. This is not something you can tolerate if you have crohns disease and I wondered if anyone mentioned to you the fact that this may have brought on your horrible first attack?
Taz x
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After my visit to the consultant it appears to be a side affect of infliximab. The symptoms are a mimic of MS. I am having an MRI scan tomorrow to see what's going on. My consultant spoke to the neurologist and he said he has seen this before and in the cass he has seen it clears itself up but they cannot give a timescale
Basically infliximab removes the protective sleeve on the nerves and can cause symptoms for immune deficiency. So all I can do is wait, the example I was told was it peaks for a couple of weeks and tends to wane. I do hope it subsides its very debilitating and I am freely admitting I am deeply upset
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Of course you are upset. We go along feeling sort of fine, then we get an upset somewhere in the body, attend for treatment and don't get what we perhaps ought to have got! Hopefully because you were on the medication for a short while it won't take long for your system to get rid of 'it'! :tulips2:
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What does this mean for your crohnes now. Will you have to stop the treatment.
On a cheerier note...how is your dog, your horse, and your partner.
They must keep your spirits up. Have you been managing to ride before this set back?
Honeyb
X
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Infliximab will stiop as of today. Last one was four weeks ago and that's it.
Pointer is being looked after again by my friend
Georgie is home with us from my dads
Fella our relationship is good he has been brilliant, can't fault him
To orris another day
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Thanks for the up-date!
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Well I went for my endoscopy, and about nine hours I was writhing in pain. Back to hospital it turns out the surgeon punctured my bowel and puss developed. I'm now back in hospital in excruciating pain with a stoma and half my colon removed
It's been devastating and terrible, its been so far an horrendous 2013
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That's awful babypink, my heart goes out to you - what a time you are having. Did you have to sign a disclaimer or can you sue? Might not make you feel any better but these so-called surgeons should have to pay for their mistakes :cuss:
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Goodness what terrible news.
I have had an endoscopy and they did not go down that far.
When did you have your operation. What a pity they could not treat it any other way. My step father had a stoma bag for many years.
Will yours be reversible.
Many people lead a full life with a stoma.
Terrible time for you. You really could not make up the dreadful time that you have had if you tried.
Honeyb
X
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What was the endoscopy for if you had bowel problems?
Taz x
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I really did not know they could go down that far when you had an endoscopy. I thought you had to come up the other direction to do the bowel.
Perhaps babypink has had a new procedure.
Honeyb
X
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Perhaps babypink is in pain and wasn't sure what "oscopy" she had.
She's entitled
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Of course.
Dreadful time.
Honeyb
X
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"Endoscope
"An endoscope is a thin, long, flexible tube that has a light source and a video camera at one end. Images of the inside of your body are relayed to a television screen.
Endoscopes can be inserted into the body through a natural opening, such as through your throat or anus (the opening through which stools are passed out of the body).
Alternatively, it can be inserted through a small surgical cut made in the skin.
What happens during an endoscopy?
"An endoscopy is usually carried out while a person is awake. It is not painful, but can be uncomfortable so a local anaesthetic or sedative (medication that has a calming effect) may be given to help you relax. The endoscope is carefully inserted into your body. Exactly where it enters your body will depend on the part of the body being examined.
"An endoscopy can take 15-60 minutes to carry out, depending on what it's being used for. It will usually be performed on an outpatient basis, which means you will not have to stay in hospital overnight.
Read more about how an endoscopy is performed.
"Risks
"An endoscopy is usually safe and the risk of complications is low (less than 1 in 100).
"Possible complications of an endoscopy include an infection in the part of the body that the endoscope is used to examine and excessive bleeding. .. " NHS web-site
Such an awful time ...........
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To be fair I'm not sure all I remember is camera up bottom and biopsies being taken which I wasn't aware of. With hours I was on the operating table. Four days in my blood bag is coming out, they are taking me off morphine for something else, still in quite a lot of pain. I'm having the odd mouthful of cereal, or semolina. I had a few mouthfuls of mash and gravy. In between grapes which I am peeling the skin off to suck into a nice sort of soft stew. Had my first cup of tea and drinking water too. My bag is being changed thre times a day which is good. I've been sat u a few times but boy am I shattered later
Today is wash my hair day, thank goodness and boyfriend brining a new nightie in for me to freshen up
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That's where the confusion happened then - you had a colonoscopy not an endoscopy. What a dreadful time you have had but hopefully now things will settle down. Do you know when the biopsy results will be back - fingers crossed for them.
I hope your nurses are looking after you well. You will feel much better with a clean nightie and newly washed hair.
Taz x
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Get well soon xxxxxxxxxxxxxxxxx
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What rotten luck you have had Babypink with just one thing after another. All of my best wishes to you that things will be on the up for you now - good luck with the results and may all be well.
Take care
Hannah
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:foryou: Babypink hope you will soon be feeling much better. :)
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Best wishes for your recovery bit by bit :foryou:
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So sorry to hear what a tough time you are having babypink and do hope you feel better and are on the mend soon
Hurdity x
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Babypink,
We have spoken before re bowels and investigations, and you may not remember but I have said on this forum before that I too have a stoma, an ileostomy, which I have had for 10 years now.
Life does go on,and will be perfectly normal for you once you have got over the initial surgery, and may even be better if the diseased bowel has gone.
Investigations such as colonoscopy can be tricky if your bowel is friable (weak) and perforation is quite a common complication.
Be kind to yourself and accept all offers of help while you recover.
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You poor thing, hope you feel better soon. Thinking of you.
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Thank you all and thank you Milly
I personally thought the appt for the colonoscopy was early but thought what the hell do I know.
My stomach is incredibly swollen and sore. All drips removed yesterday still on antibiotics, paracetamol anti sickness and digestion tablet which s a lot less than a few days ago
I managed to shower myself today but very lightheaded and dizzy don't know really what's going on
Milly I do hope it gets better
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Hopefully you had a Nurse with you? Because after such surgery recovery takes a while and the patient can become dizzy very quickly. In some hospitals there is a hair dressing salon on site, the patient pays for the service but can be pushed down by a rellie for a freshen up ;). Friends of the Hospital should be able to tell you what is available.
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So sorry to read all this BabyPink. What an awful time you've had. Surely things have to get better soon.
hugs
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:hug:
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For babypink :hug: - what an awful time you are having of late.
Hope you are soon feeling much better and that the dizziness subsides ..... probably because you are not eating much at the moment ?
Stay positive.
Meggie
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I personally thought the appt for the colonoscopy was early but thought what the hell do I know.
Babypink you have had a horrid time - lots of (gentle) hugs :hug: :hug: :hug:
I think the colonoscopy is usually used to investigate.
My OH had one recently to look at IBS type problems.
There were several warnings about damaging the bowel, luckily it didn't for him.
Perhaps they were just trying to find out what was causing your problems?
Hope things start going better for you.
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I'm finally home, exhausted and sore. Feel alienated and sort of out on a limb. Still coming to terms with events. I managed to change my bag this morning. My stomach is incredibly sore and pulling inside which is unnerving. Lots to think about and at times confusing. But at least I'm in my own bed
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Hi BP, so glad you are home, there is nothing like your own bed. I totally understand about coming to terms with events, the last few months have been so surreal for me, I often wonder if it was all a bad dream. Try to take one day at a time, I tell myself every day is another day I am getting better.
I am almost 9 weeks post op and still have that horrible pulling/tugging feeling in my stomach muscles, I look forward to the day when it eventually stops. I hope you are very soon on the mend and can start to put this all behind you, easier said than done I know. Thinking of you.
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Thanks Babylon, I guess it's still very early days and I'm expecting too much. I do hope in a couple of weeks there is light at the end of the tunnel.
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Glad you are home Babypink. Is it a temporary colostomy while your bowel heals?
Taz x
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Glad you're home Babypink. Take care of yourself.
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:tulips:
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Glad you are home Babypink
Must be so good to get away from hospital noise and back to your own bed
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Hi Babypink
I do hope you are progressing, slowly but surely. Take great care and stay positive in what must be a difficult journey.
Meggie
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I was home now back in hospital with blood clots, soma little unhappy again and shockingly tired
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So sorry to hear this.
Hope things improve
Lots of hugs
:hug: :hug: :hug:
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:hug: :hug: :hug: from me too.
Hope you will be back home again soon and on the mend.
TM x
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I'm so sorry to hear that, sending you lots of positive vibes. Hope you're home very soon.
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:hug: Hope things start to get better for you soon x
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Hi babypink,
Only Just read your thread and would like to send you a :bighug:
What an awful thing to happen to you.
Hope you get better soon.
Love Dyan X
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Hi Babypink
I hope you are progressing well and will soon be back home - what a rough ride you're on.
Let us know how you are getting on.
Meggie
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Hi babypink
Just read all about your colonoscopy complications and subsequent bowel op. Really sorry to hear this and I hope you are feeling much better very soon. Hopefully they will have reached the root of the problem this time so that when you recover from your op your health will be much better again.
All the best, ER x
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A week on and fingers crossed I can be home by Thursday. This ward is unbelievably busy 24/7 people in and out, moving beds, very noisy and the sleep depravation is not helping. They use this ward for holding patients before going to theatre or a long term ward, and I've seen so many people come and go even at 2am they still do it. It's awful and does not help with dementia people too sadly wandering about and waking you up.
Looking forward again to my own bed. Currently on warfarin and will be for life. Anyway onwards we go!
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Hope you are feeling a bit better and are home by Thursday.
Lots of Hugs
:hug: :hug: :hug:
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I hope you are home by thursday. Cant think why they have put you on a transitional ward :(
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:foryou: :tulips2: for you babypink
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I hate wards like that. No peace for anyone to get better.
Is the warfarin to thin your blood.
My daughter has a friend who had heart surgery as a baby and will be on warfarin all his life.
Hope it helps and you are on your way home soon.
You have had a terrible year so far. Hopefully things will start to improve soon.
Honeyb
X
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I'm home late yesterday, had a full nights sleep at last woke at 10am!
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Just caught up with this thread. Glad you are home babypink what a dreadful time you have been having. Good to hear you got a good night's sleep at last :foryou:
Katy x
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Glad you're home and had a good nights sleep.
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You'll recuperate much better now you're home and can get peace to rest.
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Glad to hear you are home.
Must be good getting a bit of peace and quiet.
Oh, and getting your own bed back
:tulips2:
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I just laid in my bed with my night light on and took in how damn quiet everything was, it was lovely.
I managed a bath this afternoon too, although could not quite relax in it am glad I managed it.
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So pleased to hear you're home. Hugs xx
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Glad you are in your own house again, hope this will be the end to all your medical probs and you make a full recovery.
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Hi BP, I've just got back from holiday and was wondering how you were. Glad to see you are now back home, I'm sure things will now improve for you. You are right about the dementia patients, I never got more than an hour's sleep all night because they were always shouting, trying to escape from the ward or falling over, it was very sad. I was on a gynea ward but whenever there is a spare bed the dementia patients are allocated to them, a sign of the times I suppose.
I didn't realise you were a fellow horse owner/rider, is your horse on full livery at the moment? I keep my boy at home but my husband has had to look after him for me. I can now manage a bit of grooming but still struggle to pick his feet out. I'm almost 12 weeks post op so I'm going to try riding soon but am very nervous about it, my boy probably thinks he's retired now!
I hope you will be back in the saddle before too long. Thinking of you.
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:foryou: both
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Well I'm still home which is better than last time.
I'm getting used to changing my bag quicker now, and even managing to have my much missed bath. My eating is going well, chewing for England lol. I even had a McDonalds just to up my salt intake (doctors advised to increase salt in my diet). I've worked out when I can drink and when to eat and when I can empty my bag last thing so I can sleep at least 6hrs before its full
Went to warfarin clinic last Thursday and advised my NRI was low so currently having warfarin and having to inject myself in my tummy daily (hopefully injections cease tomorrow). Back on Monday for more blood tests which they are trying to level it out. Injections have helped I feel a bit more perky and moving about a bit more too.
Pain in my left shoulder has reduced, pain in bottom of rib cage has gone, slight discomfort in bladder area so need to address that. Also have a bubble growing full of fluid near tummy button incision so needs looking at.
All in all I'm in a slightly better place, although I don't feel like myself by any means don't know where that person has gone
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You are doing really well Babypink and it's good to hear that you are still at home!
Is your colostomy temporary?
Taz
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It's setup so it can be reversed. At the moment I have no intention of having it done, I need a break from the pain and the mental anguish at the moment. Once i feel fit and ready I will consider it
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It's good to have a choice. As you say once you have recovered you will be able to make an informed decision.
Taz
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Sounds good Babypink. Onwards and upwards.
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Yes, things will only get better :) ;) :foryou:
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Thank you, it's been one hell of a struggle but getting there. Unfortunately last three days the head spinning has started again, whilst its upset me as its something else to damn well deal with. Sigh
Back at hospital Thursday for blood taking, on Monday I was told I could stop the injections which was a relief. Next week back at the Gastro clinic since operation, week after I'm back to see my surgeon, then two days later the neuro surgeon about my dizzy spells which they think is the after affects of Infliximab for the Crohens. I honestly thought whilst I was in hospital it had stopped so not sure if its started again or its that I am still quite weak from the last few months
Sat out in the sun today both doggies laid out it was lovely. Bought a few tunic tops to cover my tummy area then tomorrow hope to pop to Next and pick up some maternity trousers as all my jeans which I tried on yesterday whilst they fit, the top of them lay right over my stoma and its very uncomfortable so they are no good
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Glad the injections have stopped. Hope the dizziness passes soon.
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Unfortunately back on injections, as blood count low
Popped to my GP about dizzy ness given Iron Tablets and some car sickness tablets. Ths evening my head proper keeps spinning as if the pills are trying to correct the dizzy head, but head is saying no, quite odd
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I hate that spinning feeling.
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Took another tablet this morning, hasn't helped much at all. So I've decided to try and keep busy doing mundane things but allowing me to think and focus my thoughts elsewhere. Hope it closes off the dizzy bits and the focus bis take over. Not sure it makes sense
Oddly my GP didn't take my blood pressure which I would have thought she would do but hey what do I know
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Had my first appointment with my consultant today, after my surgery. He actually explained what the surgeon had done and they had taken away my left large colon and the small intestine is the bit creating my Stoma
The problem is, they still cannot conclude whether its colitis or Crohen disease. Which itself is a sticking point due to how the reversal is conducted. One either affects the large colon and the other affects both. I fall into the 5% of undecided which is typical. If that's the case its more than likely I will keep the stoma.
With the dizziness I fall into the less than 1% category for the MS symptoms which apparently should rectify itself but I still have to go to the neurologist. With the blood clots, they seem to be sorting themselves out, still having to ake the Heparin in injection form, until the Warfarin settles, I will have to continue with the heparin.
I'm still tired, but sleeping well, if I could only get through the dizzy part of it I would be more than happy
On the plus side, I am hoping to get to Debenhams and have a personal shopper help with outfits for work and home as none of my jeans really fit (rub my stoma). The maternity jeans are ok until I move and the damn things fall down lol
Tomorrow is another day!
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Hi BP sorry to hear you are in such a minority. Personal Shopper sounds a great idea :)
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I know I'm going to call Debenhams tomorrow not sure if you have to book them
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It will give your confidence a boost getting some new outfits. Good luck with the clothes shopping.
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That's whati though. I felt lousy and wanted to cancel but went ahead with it. Got home, went straight to bed, and woke in the morning in horror to discover I had started a period during the night, first time in seven months. My boobs were tender as hell, went to get out of my bed, had a muscle spasm and in agony with my back. My gorgeous other half helped me to the bathroom, changed my clothing and underwear, got me my toiletries.
I had to call the warfarin clinic to postpone until the afternoon as I was stuck in bed, topped up with paracetamol, other half drove me there for tests. Bloods had gone up, but not as much as they liked. So back on the injections and 6mg of warfarin, go back Monday
My head hurts, I'm still dizzy a bit and still not comfortable, when will this end?
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Oh no :( so sorry to hear this.
On a happier note, how did the personal shopping go? Did you find it helpful?
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That's rotten babypink.
Hope you feel a bit better soon. :hug:
Were you able to go and see a personal shopper, any success with the outfits?
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Yes I did, to be honest I wasn't interested I did get some things and they are still in their bags unopened. I walk by them each day as I can't be bothered opening them ???
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:(
I hope things improve for you very soon.
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Hi all
It's a while since my last post and I have gradually been improving, and exercising a little, lots of walks and shopping at ASDA etc. yesterday I returned to work exactly eight weeks after my surgery. I had hospital appointment in the morning and work in the afternoon, and I was pleased, I felt good. I went in today about 10am and just took it steady and worked until 4.30pm and a steady drive home. All in all I felt good, I even wore some of the clothes I could not be bothered with a few weeks ago. I put a little makeup on. Did my nails etc and perfume and I did look smart. Today though I am tired, have to say so a nice bath, do my hair and early night with a good book is in order
Thank you for all your lovely posts
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That's so good babypink.
Look after yourself, don't do too much.
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That's so good to hear Babypink - just try not to overdo it, it's still early days.....
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That's good news, take it easy though wont you? Baby steps and all that.
Are work being co-operative with your recuperation?